Who is Duet?
We hope that learning about Duet’s journey—and the stories of other families affected by BPAN—inspires you to join us in supporting critical BPAN research. With increased awareness and funding, Duet and others living with this rare disorder can look forward to longer, healthier, and more fulfilling lives. Music is the key to making that future possible.
Be sure to scroll to the bottom of the page and visit the links to Duet’s brother’s pages. Lake Anthony is on a mission to use his musical talents to raise awareness for his sister’s rare neurological disorder. Through music, he is helping drive attention toward BPAN research, with the hope that a cure will be found—and that he and Duet can grow up strong and healthy together in the years ahead.
OVERCOMING THE ODDS
Click on the video image below to learn more about Duet and her family.
On December 8, 2021, our lives changed forever. Our 2.5-year-old daughter, Duet, is nonverbal and began showing developmental delays along with potential seizure activity. This led us down a long road of medical testing. An EEG revealed a predisposition to epilepsy, an MRI showed mild abnormalities, and blood work indicated underlying concerns.
The final piece came when genetic testing revealed the cause: Duet has BPAN (Beta-Propeller Protein–Associated Neurodegeneration), a rare genetic disorder caused by a mutation in the WDR45 gene. BPAN is part of a group of conditions known as NBIA disorders (Neurodegeneration with Brain Iron Accumulation). Currently, there are only about 500 known cases worldwide.
BPAN is a progressive, neurodegenerative disease. In its most severe form, it can significantly shorten lifespan, often leading to Parkinsonism, cognitive decline, and dementia later in life.
While this diagnosis brings undeniable challenges, we do not share our story to seek sympathy. We truly see this journey as a gift—one that will shape who we are and deepen our purpose. We are honored to be Duet’s parents and remain hopeful as research continues to advance toward treatments and, one day, a cure. No matter what lies ahead, we are committed to doing everything possible to give Duet the highest quality of life.
